Hi all, I apologize for my second post in as many days. Quick recap, I was dx at age 56, in February, 2016 with advanced pca. 11 of 12 cores positive, gleason score 8, bone mets to my hip and femur and pelvic nodal involvement. I have been on ADT since March, which have been very effective. My wife and I visited our chemical oncologist the end of December and were able to review our genomic testing report. We found that I have 4 mutations. Of those 4 mutations, none have reported to be responsive to any FDA approved treatment in the US. As I sit and think about this, I realize that (looking at the report) that my uro/onco received this report the beginning of November, but did not inform us that he had received it until just before our meeting (almost two months after he received the report). When we met, another person doing his fellowship met with us, almost exclusively instead of our uro/onco, and did not provide us with accurate information. We are also scheduled to have an RP next week (based on our urging). Initially, the team had mentioned that the removal would affect my quality of life and the cells would also continue to pop up somewhere else; therefore, not be effective. Now, they are willing to provide surgery.
My question is this: Does anyone out there have any recommendations for an urologist/oncologist that could act kind of as someone who would be able to provide a lite guidance, be up on clinical trials, and actually have the patients best interest in mind? I realize, as gregg57 mentions, we truly have to be our own advocates, I am sure it would help a lot of people in this forum and more if people on this board could share with us, a urologic oncologist who they have been satisfied with. It seems s disproportionate to have to fight so hard and never really get any detail from our doctor. Rather than going it alone, it would help to have a medical advocate to at least share the load? By the way, I am being treated at UCSF, live in Northern California, and would travel anywhere in the US, or farther. Thanks to all of you so much for being in this together@ Maybe I am letting the Lupron get to me today, but it seems like I really need to take control of this! Thanks again to all.